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L5-S1 Advice? **New Member**

jaymlroyjjaymlroy Posts: 9
edited 04/28/2013 - 2:11 PM in Lower Back Pain
Hey there everyone, I am from Toronto Here is my deal, maybe someone can provide some advice. It started June 27, 2012. Low Back Pain with Right Leg Sciatica. I knew that is what was going on and saw my doctor that day, I mean all I did was stand up and bang. I saw the doctor and they agreed that it was sciatica and suggested pain meds and physiotherepy right away since it was caught quickly to relieve the pressure on the nerve. That of course made things worse. I continued to try though to no avail. Several trips to the doctor cause things were progressively getting worse...I thought it was but the doctors of course said that it was because I am "overweight" which is not something that I didn't know, but thanks for the reminder again. But, we know our bodies best and I knew that it was getting worse. FInally after dealing with severe pain and agony, not being able to walk farther than 15 feet, sitting was and still is a pain in the ass, I can sit only for maybe 30 minutes before unbareable. In October they finally got me an MRI. And I was told that it was the following problems: Lordosis, minor annullar tear l5-s1, mild disc bulge l5-s1, disc height loss with dessication at the l5-s1. The only thing after that was they suggested a caudal epidural with several cortosone shots and too see if anything improves as well of course as continued physiotherapy and pain meds. Now it is April 2013 and nothing has really improved...the nerve blocks eases things up for a bit, and then I do physiotherapy and I am back and sometimes even worse off. The pain doctor says that it is Degenerative Disc Disease. I see a Orthopaedic Surgeon that specializes in Spine Surgeries on April 30, 2013 finally. Any advise, anyone with similar issues, and does it sound like a candidate for a surgery? I am not ruling it out, just trying to be prepared.

Thanks everyone, I look forward to the responses if any.



  • odouglassoodouglass Posts: 264
    edited 04/25/2013 - 7:54 AM
    I am in a similar boat as you, and am scheduled for a Spinal Fusion on May 1st. After going through all of the non-surgical treatments I did see a neurosurgeon and got the answer- I needed surgery. I have a large paracentral herniation at L5/S1 pressing on the exiting nerve root at L5 and the entering nerve root at S1, Degenerative Disc Disease, Pars Defect, Slipped Disc and Spinal Stenosis!! Good luck on your doctor's visit, keep us updated after you speak with the surgeon. I've seen lots of successful back surgeries and my doctor told me 98% success rate!
    Olivia Douglass
    MIS TLIF L5/S1 on 5/1/13
  • Well, here we go. Tomorrow (April 29) is the day I find out what is going on by going to the surgeon. I have been in a pain level that has not gone below a 7 since June 2012. The nerve blocks and physiotherapy have not helped...physiotherapy seems to make it worse. I have gone and restarted that program 3 times hoping that it would get better. From all the things I have read on this incredible website...I really like the information that it provide....that I may require a fusion based on the symptoms and that none of the non-surgical treatments have worked. But, I have researched and have my questions prepared and hope that the surgeon is open to answering them, I have waited to long to get this sorted out and hope to get some of my life back....
  • odouglassoodouglass Posts: 264
    edited 04/29/2013 - 2:40 AM
    Good luck at your appointment today- fingers crossed that you get all of your questions answered and that the doctor is able to offer a permanent solution. Let us know!
    Olivia Douglass
    MIS TLIF L5/S1 on 5/1/13
  • Well...that was a complete waste of time, and a day off of work. Went to the surgeon, was there for 20 minutes including the "assessment" and he said, "can't help you..." and sent me home. My level of frustration has peaked...
  • KC ThatsmeKKC Thatsme Posts: 42
    edited 04/29/2013 - 7:30 AM
    Sorry that the surgeon you saw was no help at all. My suggestion.....get a 2nd opinion!! Did you see an ortho surgeon or a neurologist? That might make the difference in getting a resolution too.
  • That is just not professional- saying he out right cannot help you! I would totally recommend getting a second opinion as there has to be something that someone can do! :(
    Olivia Douglass
    MIS TLIF L5/S1 on 5/1/13
  • Thanks for the advise and it is something I am persuing. However, it is going to be a very long one though. It took over 6 months to get this appointment for a 20 minute consult. I am very disappointed.
  • jaymlroyjjaymlroy Posts: 9
    edited 04/30/2013 - 5:56 AM
    It was a orthopaedic surgeon that specializes in spine surgery.
  • I'm not surprised that the surgeon said he was unable to help you. DDD is rarely surgical unless there are other issues, and the other issues in your report were "mild" which are also rarely surgical. I'm not however down playing the pain you are feeling. I do suggest that you go for a second opinion, go ahead and get the appointment, especially since it takes so long to get in. Until then, could you look into possible going to a pain clinic? I'd certainly go back to my primary care to seek some additional help with your pain. I hope you get some relief soon.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • jaymlroyjjaymlroy Posts: 9
    edited 04/29/2013 - 5:42 PM
    I have been to a pain clinic and get injections every 2-3 weeks cause the pain returns so quickly. I have been going since October 2012. Not too mention it doesn't bring the pain below a 7. And pain meds make me into a zombie.
  • Have you tried medicines that are not "pain killers" like muscle relaxers, nerve meds? Have you tried them in various low dose combinations? And is there a chance you could get a "second opinion" at a different pain clinic? (I have not been to a pain clinic so I'm not sure if you are allowed second opinions). Other than that, I have no suggestions. I do hope you can find something that will give you some relief. All of us here understand how frustrating pain can be both physically and emotionally. You've come to the right place for encouragment, even if that's all we are able to offer you.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • What injections have you gotten? ESI? Facet? I have gotten partial relief with facet injections and if the next set also help will schedule a rhizotomy. While the facet injections don't stop the sciatic pain it is enough relief to keep going.
    Did the surgeon say why he couldn't help you? In the past I had several tell me I wasn't a surgical candidate but they at least pointed me to pain management. Now that I am a surgical candidate I'm doing everything to put it off...
    good luck to you.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • I can understand your frustration. Been there too. Just a couple of thoughts.
    1. Physio. I too had physio which made my problems worse. But discovered it was only certain exercises. In my case it was any movement side to side that was the killer. So just stopped those exercises but did the rest. Concentrated on those involved stretching hamstring muscles,gentle spine stretching & walking as these seemed to be the most beneficial. Also bought a wind up cooking timer & every twenty minutes got up from a chair & walked around for 5 mins.

    2. Pain killers. Some work for some but not for others. You just have to find the one that helps you the most & doesn't turn you into a zombie.

    3. Weight. Heavier you are the more strain on the spine. more strain on spine the more pain.

    4.Start practising activity modification. By that I mean know your physical limitations & plan accordingly. For example when I travel I know to take a small lumbar roll so I sit comfortably in a plane seat/train seat etc.I also double dose on pain killers when travelling over an hour & do not carry a case or bag over a shoulder or pull it along as that unbalances the spine. I also bought a fold up walking stick which stays hidden until I need it..usually towards the end of a good day or at the beginning of a bad day. I kind of run out of power to the legs sometimes!

    5. Know that you will get good days & bad days for no reason.

    6. Do not make the mistake of thinking the medical profession can or ought to wave a magic wand.Often times surgery can actually make things worse. If your first surgeon said "No" did he give a reason?

  • jaymlroyjjaymlroy Posts: 9
    edited 05/04/2013 - 2:11 PM
    Physio is actually causing a lot of problems, even trying to find exercises that don't hurt vs. the ones that do and modifying it accordingly. The problem I find is that most of the 95% of them send me into spasms, and then trying to get into my car I end up having to lift my leg in and out. I have the Caudal Epidural, they say my facet joints are not the issue. It helps for about 24 hours it seems...then it is back to normal. If I walk longer than 13 minutes it seems my legs are done...nothing left and the pain is ridiculous. They say it is indeed Sciatica, but the MRI shows that nothing is touching a nerve, so they have no idea, I have asked them if it could be the disc itself causing the problem and they can't seem to give me an answer. My family doctor is more sympathetic and is trying to figure it all out, he thinks that there could be pressure on the nerve when I am standing and that is something that the MRI is not going to show since I am laying down. I may be overweight but I am far from not being active. I worked out 3 to 4 days a week, I know the problem could be from my past employment which was Paramedic. I was since I was 18 and left when I was 28 so 10 years of lifting etc...can do that. I have played competitive sports and wish I could right now. Haven't been able to do anything for almost a year now. Unfortunately my bad days seem to outweigh my good. Today is one for example. Trying to get into the car and my leg just couldn't do it and I ended up falling...that doesn't help the situation either. I wish the doctors would listen and just take into consideration everything and not just the obvious. I am open to all options...I just want to make sure that nothing is missed just because they assume it is all because I am overweight. Sorry, a bit touchy. Just fed up...
  • Hi, I agree with the need for standing images. Brief history, I had a major spine surgery at age 9 fusing many levels, most of the thorax and the first one or two discs of the lumbar. I know when all of my "stuff" started up two years ago I woke up unable to walk. I had been told the year before that I was not a surgical candidate and there were several sound reasons why. So when I woke up unable to walk, my husband took me to the ER. After an x-ray the ortho on call came in and said that my back was out of her comfort zone so she sent the film to the best spine doc she knew, it went to his cell phone while he was at dinner with family and NOT on call. Basically he called in and asked for a CT scan, and if there were no broken bones he'd see me Monday (this was on a Friday I believe). Well the CT came back negative. So I was sent home on crutches and told my DDD was so severe it was causing me to "reflex" and that caused me not to be able to walk. Well, I saw the spine specialist, he ran through my CT scan and basically found a very small bone spur or whatever that the radiologist missed and was probably causing this "pain". When I explained to him that I wasn't able to stand on that leg or walk, he tested my reflex he did get concerned and checked my reflexes. I had zero reflexes in that leg. The good news? He could fix it with a 2 inch surgery, 2 weeks out of work (I believe this was going to be a discectomy). He wanted me to go through the ESI shots first just to see if he could get the swelling out of the area and avoid surgery. At my next visit we knew I was going to have to have the surgery, so we discussed in great detail about the surgery and when he stood up to leave the patient room he said, "Let me get a standing x-ray before you leave, probably not necessary but I like to know as much as possible." Well, I had the x-rays and was put back in the patient room. They pulled up the x-ray on the computer and when my surgeon walked in completely jovial took one look at the x-ray and the color just drained out of his face. I started crying immediately because I could just read his face. This is already so long and this post is about you so I'll sum up by saying... we thought we were dealing with something small, and in one "Standing x-ray" things changed drastically. That 2 inch incision, pretty much my entire back (I already had a scar neck to crack) and 20 hours in the OR over the summer. It is COMPLETELY possible the images are missing something. I had the same issue again this past month I had to have some hardware repair which left me with a CSF leak (unfortunately I'm prone to these)... It didn't heal and I ended up in the ER severely dehydrated. They did a CT scan and there was no leak...even when read by the most competent radiologist in reading spinal CTs that my doc knows. I had every symptom of a leak so he had to open up like 8 inches of a recently healed scar for exploratory surgery and guess what? I did have a leak that didn't show up on the image. So twice now there have been true problems not show up on imaging.

    Please please please, keep searching for a spine specialist that wants to help you and ask for some standing imaging. I do hope you can find this doctor soon and you can get the correct treatment you need to get back to your life. Hang in there. Lots of us here can understand your frustration and we are all here to listen.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • I think I am about ready to lose my mind...this pain has reached an all time high without relief. Thankfully we are trying more ESI Friday, hopefully it will give a little more relief this time around. As we all know, it is quite easy to feel like we are losing our minds because of pain, medication etc...

    All that I know is, it has too stop. Some how. I put physiotherapy on hold for now until the pain is managed a little better, otherwise it is just not going to happen. Of course sleep is also a big issue. I am getting a little over 2 hours of sleep a night, and it is making things difficult to concentrate when at work...thank god I am on modified duties...I for sure wouldn't be driving that is for sure!! (I work in the public transportation - transit industry). I am on desk duty, and I am able to walk around, sit and stand whenever needed...the problem is, I am looking for a place to sleep rather than work (ha ha).

    I am currently looking into the Open Upright MRI and having the testing done under weight bearing conditions...being in Toronto Canada we don't have them, the closest is the US or British Columbia. But it is a start, and I am willing to do whatever it takes to sort this out.

  • ive had 2 l5s1 surgeries and 2 replaced hips. no, i am not 70 nor 60 nor 50 nor 45. I will never get surgery again as long as i see my Doctor who is knowledgeable in Ozone, Acupuncture, Reflexology, Laser, Scanner, Thai and others. I wish i could understand her better, but the results were amazing. she brought my nerve back! Club foot....gone. Hip Pain...gone.
    she worked on me 8 days for an hour, and a month later i was so much better. I have to admit though...my hips are sore now, but the back feels great. i have been chasing around a three yr old since my last treatment in august 2012. i cant believe i was able to do so. if i run like a tiger again, it will be because i can travel to see her again. who wants to go with me?

  • I fell damaging my L5/S1 in Jan 2012 and received a Spinal Cord Stimulator in Oct 2012. In Jan 2013 I began having very bad spasms and learned that a previous injury at my L4/L5 had Ben reactive to the recent injury. My doctor says the only way to correct this is to have the fusion. I learned today that workers comp denied the claim for the surgery order. My case manager at my attorney's office will now have to go through a process to get this moved forward. Have anyone experienced this? If so, how long was the approval process? Was the denial overturned?
  • I was reading your post and maybe I missed something, but are you seeing your family doctor about this problem. IMHO, if so, you need to be seen by a specialist.
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